In South Korea, a former lepers’ ‘hell’ a refuge for ex-patients

MONDAY, NOV. 25, 2013

A former South Korean leprosy patient lies in a bed at Sorokdo National Hospital on Sorok Island, South Korea. The island has become a peaceful refuge for many after years of discrimination and hardship. (Associated Press)

SOROK ISLAND, South Korea – Kang Sun Bong once considered this tiny island a “hell on Earth,” a place where hospital workers beat the leprosy patients exiled here and forced them into harsh labor, sterilizations and abortions. But three years ago, old, sick and broke, Kang returned to the place he’d been banished with his mother decades ago.

His savings wiped out by cancer treatment, the 74-year-old now hopes to live the rest of his life with hundreds of other former patients on Sorok Island, which sits off South Korea’s southwestern tip and has become a mini-welfare state.

Despite the misery many say they endured here, dozens are returning each year, partly for the free medical care, food and housing offered to former sufferers of the disease. But the onetime place of exile has also become a peaceful refuge for many after years of discrimination and hardship, the only place they feel at home.

“I came here because I thought I should die while being nursed,” said Kang, who had a bitter, lonely childhood here, but came back to find the island had utterly changed.

Most returnees are cured of the disease and are free to live wherever they choose. But many say life is better here than outside the island, where prejudice against leprosy still runs deep.

Yu Myung-sun, 61, who lived on Sorok for six years until 1974, returned in 2008 after living with other former leprosy sufferers in a village near Seoul. People outside the village “wouldn’t even look at me … restaurants wouldn’t sell meals to us,” Yu said.

“People on Sorok Island make me feel at ease,” she said, wearing a pair of big sunglasses, her face dotted with black spots from anti-leprosy medication. “I feel comfortable here and this is where I’ll die.”

Starting about a decade ago, the number of returning former patients began gradually increasing. Over the past few years, about 70 people, mostly former residents, have resettled here each year.

Six years ago, a bridge was built linking the island, which is about the size of New York’s Central Park, to the mainland, symbolizing the end of its isolation. Growing numbers of tourists are visiting the island, which still preserves historic sites, including a detention building for disobedient patients and another ward where sterilizations took place.

These days, there are about 570 former leprosy patients, with an average age of about 74, as well as six who are currently being treated for leprosy but not contagious, according to officials at the government-run Sorokdo National Hospital. Twelve doctors are on staff.

Leprosy, also called Hansen’s disease, is neither highly contagious nor fatal. It is a disabling chronic bacterial infection that often lies dormant for years before attacking the body’s nerves and slowly causing numbness. Hands and feet eventually claw inward and serious injuries often go unnoticed because no pain is felt; fingers and toes can be lost and blindness can occur.

It has been curable since the 1940s thanks to antibiotics. As in many Western countries, leprosy has almost disappeared from South Korea, which reported only six new cases in 2010. The disease remains a problem in Brazil, India, Indonesia and East Timor. Worldwide, the number of new leprosy patients has dropped from 10 million in 1991 to around 230,000 last year.

Active leprosy communities still exist in several countries, including in India, China and Vietnam, and discrimination continues to plague those maimed by the age-old disease.

In South Korea, the stigma remains strong. Many former leprosy sufferers say they’ve never visited a public bath house, a popular pastime, and some are still turned away at restaurants. Many are shunned and ostracized by their families too.

“The people who returned really had no other places to go,” said Lee Kil Yong, who lived on the island in the 1960s and now heads the Korean Federation of Hansen Associations, a government-affiliated organization that promotes leprosy victims’ rights.

The island was established as a leprosarium in 1916 by the Japanese during their 35-year colonial rule of the Korean Peninsula. They mobilized patients to produce war supplies and forced sterilization and abortions.

South Korea abolished its anti-leprosy segregation policy in 1963.

Kang was 7 years old and did not have leprosy when he was quarantined here in 1946 with his mother, who had the disease and was housed in a separate compound. He lived with about 10 boys in a single room. They were infested with lice and many of them suffered from malnutrition. A few years later, he developed leprosy himself.

“We were nothing but skin and bones,” he said. “We only had rice, kimchi and watery soups.”

During once-a-month meetings between children and parents, he wasn’t allowed to touch his mother through a wire fence that separated them. Everyone was crying, he said. Parents “cried after seeing how their children looked, and children cried because they missed their parents so much. It’s beyond description,” he said.

He fled the island 16 years later, in 1962.

“It was like being sent to the hell and escaping. … A hell on Earth,” Kang said from his small home on the island. “I returned in 2010 and found things have changed completely and bias has disappeared a lot.”